Thursday, October 30, 2014

Musings Prior to Bed: Mental Health, Relentless Pain, Guilt, and Gratitude

I spend a great deal of time in therapy these days trying to sort out the seemingly relentless and never-ending mess present within my mind. More often than not, it does feel as though there is a constant war taking place within my overly-neurotic brain. It's not easy, for I struggle with major depressive disorder, borderline personality disorder (albeit a mild case), and OCD on top of my KTS. Many a days, I find myself wanting to feel at peace, even if it's merely to a minimalistic caliber. I have a great deal of trouble achieving internal calm despite my hardest exertions. Having chronic pain while simultaneously struggling with mental illness can be abominably fatiguing. Yet, I am aware that there are people who have overcome much harsher circumstances, and I always want to be cognizant of that fact. I think it is absolutely vital to be conscious of other worldly happenings. While it does not change my particular circumstances, it does indeed help to add perspective to a rather complex situation.

So, while I may be in a great deal of pain on a daily basis (I have an impending debulking surgery that needs to be done with Dr. Spencer), I do try to be aware that life could be a lot harsher in terms of my life with Klippel. In fact, I was speaking with a dear life-long (non-chronically ill) friend about this on the phone just earlier tonight. What if I had been born in a poverty-stricken 3rd world county in which there was no place suitable to treat Klippel? I would not have made it past my 1st birthday, as I was septic at the tender age of 6 months old. What if I did not have parents who were not willing to take care of me when I am unwilling to take care of myself? What if I had to handle my financial burden entirely on my own? Surely, in spite of everything, there is a great deal in which to be thankful for.

However, this gratitude is also followed by a momentous magnitude of guilt, as I cannot help but wonder why I was the lucky one; why was I the one that was born in Boston as opposed to China where Klippel babies are sometimes left on the streets to die (based on superstition of their birthmarks, so I have been told by some reputable sources). Not to mention, the guilt that comes associated with being the chronically ill one in the family that has inconvenienced everyone else. None of this is easy for me to comprehend at this point in my life, and I do not believe that I am supposed to have all the answers as of yet. I believe that in terms of learning to accept my condition in terms of what I have, what it has done to me, and what it has done to others around me, there are layers that will constantly be unraveled as my life progresses.

While I would never say to someone going through a harsh medical situation (whether that be mentally or physically) that it could be worse, the verity is that in my case, I am fully aware it actually could be. There is, however, a fine line between glamourizing my situation because of the fortunate circumstances surrounding me and that of denial... I am still trying to maneuver my way through all of this mess, but I am hoping the chemo med called Sirolimus that I am back on will work some wonders in terms of my physical health. I undoubtedly believe that my physical health has played an active role in further aggravating my mental health (as many Journalistic studies have proven in patients with chronic-illness). Mental health issues run in my family on both sides, and that in itself is something to be aware of as these genetics are often passed down. So, while I fully believe that I would still be dealing with a slew of psych. Disorders (even without the constant distress Klippel has inundated my life with for the vast majority of my time here on Earth), I do not believe they would be nearly as out of control as they are now.

Just some random musings prior to bed as my mind is restless at current.

May you all be well,

Arianna Helena

Monday, October 27, 2014

Hope Breeds...


The Wrath of Life

  • I struggle with Major Depressive Disorder along with Anxiety and Borderline Personality Disorder. Both have been a despicable force to be reckoned with over the years, but they have been particularly brutal these past couple of months...especially now. I do see a team of Psychological Professionals, ones who are capable of treating a Chronic Illness Patient of my magnitude. What lies beneath this writing stems from one of the countless nights in which I have found myself at odds with my own mind. If you are experiencing feelings of Depression and/or Anxiety or Distress, reach out to someone you feel comfortable expressing yourself to. Keeping these thoughts isolated in your own mind will only cause more harm. If you are someone who struggles with mental illness and a chronic illness, than you know that life can be seemingly impossible at times. Yet, we must encourage each other to continue on with our Plight to live... I wrote the text below as a way of helping others (who do not face the hurdles of mental illness or Chronic Illness) to understand what goes on within my own mind at times... I hope it can give people a better idea of how draining and utterly manipulative mental and chronic illness can be.

Here goes my story, tritely entitled “The Wrath of Life”. As you will see, there are obvious fictional components to this story. The feelings depicted in it, however, are anything but false.
_______________________________________________________________

My own ineptitude in terms of writing is annoying me on a grand scale right now.
How is it possible for one body to be inundated with such a vast supply of emotion and yet unable to emit it in a manner considered psychologically healthy?

I will give this a try...

Despair is my state of mind. My past haunts my already taunted, fragile soul. Life is stepping on me, watching as I lay helplessly on the hard floor, bleeding profusely. If there is one thing I am good at, however, it is putting on a good show and fooling even those closest to me. I have to, after all, as I have to keep up with the races of everyday life. Perhaps more details go into this “effort” than one would assume...I have to exert all of my energy into it. It requires being insanely alert at all the right times and around the right people. There are, after all, no rooms unoccupied for those who dare commit a mishap. Manipulating those around me has become common practice. It's not that I'm on an ego-trip, however, for manipulation invokes a deep sense of shame within me. However, when I have allowed myself to fall into a million little miniscule fragments to my closest confidantes, Life only shrinks for a short while. So, I continue to manipulate those around me in that I make them believe I can swim and more importantly that I want to keep swimming despite Life. More on “Life” and his heinous ways to follow within this post.

The majority of these days, I find, it is easier for me to stand out from the crowd than it is to camouflage, subconsciously speaking...and when trying to put on a facade of being okay, one must always blend. Blend, my darling, as you would your favorite blush onto the hollow of your cheek... You are in control of the brush, so if any pigment does not blend seamlessly, you are the only one to blame. Shame on you if you so much as commit the slightest error, for Life is always watching. In Life's eyes, there is nothing even remotely adequate about my efforts, ever. Yet, I keep trying, waiting from him to lessen his wretched grip on me (more on that Odious man and his slimy tactics later).

Some time has now elapsed.

“Life, I do not believe myself to be worthy of having yet another shot at you. You've given me numerous second-chances, ones that other children of chronic-illness did not get... Yet I still do not feel any damn closer to the light. And, because I am now so resentful of the light (out of my innate spite for not having found it yet), I may repel myself from it if it ever dare ventures toward me again.”

“Silly child”, Life responds, “pick yourself up from off the floor.”

“I cannot, as you are crushing me with your superiority. My veins, they bleed ineptitude... You're crushing me...do not you see that? Maybe if you would give me an incentive, a tangible one. I'm tired of singing Over the Rainbow. Where is the freakin' Rainbow? Ask Judy Garland if she ever found it...ask her how that worked out for her and her precious little pup. I start humming Over the Rainbow, as there is merely nothing else to do... It is not atypical of Life to do this to me, and I have learned that if I insist on surviving, I must deal with his invasive, spirit crushing episodes. Wanting to end this horrid affair of attempting to live without Life's weight crushing me (as I am told by a slew of professionals) means I am ill, mentally speaking. Maybe if Life did this to them continuously, they would understand.

In truth, Life always bears some of his weight on me, and it makes it harder to breathe. Sometimes I feel as though I am gasping for air while Life digs his jagged feat into the curve of my spine. And then, Oxygen finds him and joins in on the effort. Now I am combating two vile, wicked forces as opposed to the already malignant one I was prior. “Please,” I plead to them, tears spilling down my glum, fatigued face. “You are killing me in every way in which one can be killed! Physically the pain is unbearable and my spirit has already been terminated... What more do you Monsters possibly want from me?" “St...sto.....STOP,” I scream with all the fight I seem to have left within me. "MY SPINE...THE PRESSURE...PL..PLEEAASEEE...STOOOOOP."

My vision is blurred from the hefty supply of my own teardrops. I go to wipe some away with my right hand in an attempt to comfort myself. Only now, Oxygen has seized my right hand, and I can do no more with the physical state of my body.

Life now bears its force upon me even heavier, as a cruel reminder that I will not win this battle based on outlook or my mentality alone. His bare-feet continue to cut through the skin of my back like those of gargantuan needles. I feel hollow as a corpse, and yet I know I am still alive, for I can still hear the tedious, monotonous sound of air exiting my right nostril. I do not plead with Life nor Oxygen, for those Two are relentless. I lay there, just lay there, feeling dead for what feels like an eternity. At some point, I know my body will succumb to a state of slumber, if only that of a short one. I lay there, helplessly, as Life and Oxygen dig into me.

***

At some point, I awake on the floor in a room inundating with daylight. Life is lying right next to me, staring me right in the eyes. He has adjusted his position, his right-hand fingernails now dig, harshly, into my lower right arm. My gaze immediately shifts to remnants of my blood that He and Oxygen left last night. How mighty generous of them.... I am so accustomed to the pain that I am no longer horrified by it but rather nonchalant about it. I close my eyes, telling myself that this is indeed my reality, not a nightmare nor a one time love affair with an unhealthy habit. The new blood interlocks with that of last night's, and I watch them merge into one dried-up pile of despair... In a few minute's time the new blood will have submerged itself with the dry blood and the two will be practically identical. The memory of the blood haunts me...where is that permanent remedy for memory at, anyway?
“It was awfully nice of you to stop crushing my spine last night,Life, but can you please go elsewhere right now?” Just then, the memory of Oxygen enters my mind, but I do not dear instigate Life by bringing him up... After all, I already just asked him for a pretty grand favor. This is Life, after all, and He will not be spited nor belittled under my influence.

There's that sonically induced interference again...one of my nostril's continues to emit air. Life, His demonic eyes staring intently into mine, replies after a few moments of unsettling silence. “Silly Child,” he laughs wickedly, “it's time to get up.” Now, his nails are digging into my skin even harder. “Okay,” I retort. “Okay,” I say again, as though I am trying to convince myself that it all actually will be just that, okay. I get up, all the while Life keeps his grip into my arm hard and steady, and his body mimics mine. For in order to stay connected to me, he must stay on top of my every move. I am a prisoner of Life, only the vast majority of people do not see that. I can conceal Life's very wrath and presence by orchestrating every meticulous detail of everday...from every smile, to what I wear, and don't forget that coquettish laugh of mine...


Life has literally implanted himself into my veins, and there is no way to untangle him from me. Where I go, he leads, for I'm his Jazz Singer and he is my Cult Leader.  

Sunday, October 26, 2014

In My Veins

I discovered this song a few months back, and ever since I have been utterly infatuated with it. The lyrics resonate with me due to my experiences with Klippel-Trenaunay Syndrome and the way in which it has impacted my life so immensely. Perhaps you will like it, too. Below are the lyrics that go along with Andrew Belle's song "In My Veins."

"In My Veins"
Nothing goes as planned
Everything will break
People say goodbye
In their own special way
All that you rely on
And all that you can fake
Will leave you in the morning
But find you in the day

Oh, you're in my veins
And I cannot get you out
Oh, you're all I taste
At night inside of my mouth
Oh, you run away
'Cause I am not what you found
Oh, you're in my veins
And I cannot get you out

Everything will change
Nothing stays the same
Nobody here's perfect
Oh, but everyone's to blame
Oh, all that you rely on
And all that you can save
Will leave you in the morning
And find you in the day

Oh, you're in my veins
And I cannot get you out
Oh, you're all I taste
At night inside of my mouth
Oh, you run away
'Cause I am not what you found
Oh, you're in my veins
And I cannot get you out

(No, I cannot get you out)
(No, I cannot get you)
(Oh no, I cannot get you out)
(No, I cannot get you)

Everything is dark
It's more than you can take
But you catch a glimpse of sun light
Shining, shining down on your face
Your face
Oh your face

Oh, you're in my veins
And I cannot get you out
Oh, you're all I taste
At night inside of my mouth
Oh, you run away
'Cause I am not what you found
Oh, you're in my veins
And I cannot get you out
(No)

No, I cannot get you out
(Oh, you're in my veins)
No, I cannot get you out
Oh no, I cannot get you

Saturday, October 25, 2014

I'm Back

Hey, everyone. I hope you are are genuinely well. I apologize for not updating for quite some time; I've been on a bit of a roller-coaster lately in terms of my mental and physical health. My last surgery did indeed take place, but went horribly awry in some aspects. It was nobodies fault by any means, but it turned into an 11 day inpatient stay at Boston children's hospital as opposed to that of of maybe day surgery or 1 or 2 days...

Writing is something I have been incredibly passionate about for several years now; the entirety of my life I have felt misjudged by the vast majority of my colleagues in a slew of ways. With writing, however I get to reflect and present myself in a way that I am too awkward to do so in a verbal manner...that, in itself, is incredibly soothing and cathartic to me. I also write about issues
I am exceedingly passionate about, like having Klippel-Trenaunay Syndrome and the ways in which it has impacted my life thus far. Mental health is another topic readers will see me discuss frequently; why does it take Robin Williams (May God rest his soul) killing himself for depression to make headlines? While many were aghast that such a loved man could not find strength to hold on, the truth is this disease impacts mere mortals everywhere. 

I look forward to sharing some of my experiences with you as my far as my Klippel, mental illness, experiences at CHB, and other personal matters are concerned. You will never see me holding a scalpel or be behind the laser of a machine that has helped save my life numerous times, but I hope to save lives in a different way. That is what envokes a burning flame within my soul. I have found my passion throughout the past several years, and despite my obstacles I hope to achieve them. 

In the meantime, though, I do believe in the kindness of strangers as the Klippel family has kept me afloat on many of my off days. They are no longer strangers, though, but treasured friends despite where they end up on this sometimes rather unpredictable, jagged journey.

When I started this post, it was my first time writing since my last one. I was not even quite sure I would be able to construct a simple sentence let alone write in paragraph form...here is to hoping this was somewhat edible in content. 


I greatly anticipate writing more incredibly soon,
Ari